Would You Place Your Ill Partner in a Nursing Home?

I recently heard a story about a couple in which the wife has had Huntington's Disease for twenty years. They married in their early thirties and she was diagnosed five years later. Over the course of the last two decades, each exacerbation has left her at a lower level of functioning. For the past ten years, she has lost her ability to do any self care, to transfer herself from bed to toilet and back to bed, and to speak. Over the past five years, her cognitive abilities have become compromised.

Her husband has been her steadfast caretaker for all this time. He modified their house to make it handicap accessible. He found aides and home health care providers to help with her care. He took her to try many avenues of treatment. He was the primary parent. And he worked at a full time job.

Now, after twenty years, he realizes he just can't do it any more. He has his own physical conditions, and he is bone weary and wants more joy in his life as he enters his own final decades. He is afraid that if he keeps being the primary caretaker, he will get sick and be unable to help his wife at all.

He decided to place her in a high quality nursing home - for her sake and for his.

This is one of the toughest issues couples dealing with debilitating illness face. What do you think about this man's decision? Have you made the decision to place your ill partner in a nursing home or other long term care facility? Would you ever consider doing this?

Two Blog Carnivals of Interest

Check them out:

a patient centered blog carnival is up at Getting Closer to Myself.

a carnival about pain related issues is up at How To Cope With Pain.

Do You Let Your Partner Read Your Journal?

I know many people who are living with illness who keep a journal, and several well partners who do also.

The writers tell me that they are able to express themselves, unfiltered and unchallenged, in their journals and feel enlightened and purged. They can write nasty things about the nasty doctors who insinuate that they are malingering or depressed. They can write about the heartache that attaches to all the things they are no longer able to do, alone or with the partner. And they can write secret thoughts - about wanting it to all be over, or rage at the ill partner for being ill or rage at the well partner for being well.

I kept a journal during my first year of illness when my pain condition was out of control and seemingly undiagnosable. I wrote like an avalanche. Words exploded onto the page. At times it felt as if a switch in my consciousness had been shut off and language streamed out from a source more limbic.

I wrote about my mother's voraciousness and my father's sedateness. I wrote about Richard's endless kindness and my crushing ambivalence over wanting him to do even more and fearing that one more request to hold my while I cried would finally shatter him. I wote about my yearning for Paris and my resistance to stepping even a few feet outside and facing the unbearable contrast between my limitations and nature's perseverance.

Sometimes people give children a present of a dreamcatcher -- an object made form sticks and strings crafted into the shape of a web, decorated with beads and feathers. It is used as a charm to protect sleeping children from nightmares. My journals were my dreamcatcher. They bound my terrors so that I could focus on ways to try to lessen my physical pain.

At the end of every day, I showed Richard the pages I had written. I showed him so he could keep pace with me and so that I wouldn't have to say any of the things I wrote about out loud. It was a form of intimacy.

Do you keep a journal? What does writing a journal do for you? And do you ever share it with your partner?

I Really Hate Valentine's Day

Valentine's Day is a complicated holiday for couples who are dealing with chronic illness or pain. It's supposed to be a day of champagne bubbles and dinners at romantic restaurants, chocolate and sweet kisses.

But what if alcohol and chocolate aggravate your symptoms and pain keeps you from being able to sit for too long, especially in a restaurant? How can you celebrate Valentine's Day with your sweetie? Do you even want to or do you prefer to let it slide by as just another day?

I was feeling rather bleak that my pain picked Valentine's Day to spike. Instead of cuddling with my partner, I was curled around a heating pad and focusing on all the things we would not do that day. And when I get in that state of tunnel vision, it's hard for me to extract myself.

Richard pointed out that even if we sat of the couch, side-by-side with the heating pad and the TV remote control, we were still being together. In some ways, without all the imposed artificiality of hearts and flowers removed, we could focus on what was truly important - not the symbols, but our love and tenacity.

He could switch channels while I switched temperature settings, and know that we have abiding love, and don't need Hallmark cards to prove it.

So I hope you all find your way to appreciate love for each other, on Valentine's Day, and any other day you choose.

Finally, an Article about the Caregiver

No news to most of us who either are the caregiver and know how powerful and endearing and demanding a role that is, or are the ill partner who witnesses the caregiver's fatigue. But this article in the New York Times articulates well how vital it is, especially for health professionals, to pay some attention to the caregiver.

Offering Care for the Caregiver

"......For all our assertions about the importance of caring in what we do, doctors as a profession have been slow to recognize family members and loved ones who care for patients at home. These “family caregivers” do work that is complex, physically challenging and critical to a patient’s overall well-being, like dressing wounds, dispensing medication, and feeding, bathing and dressing those who can no longer do so themselves.

Many of these caregiving tasks were once the purview of doctors and nurses, a central component of the “caring professions.” But over the past century, as these duties increasingly fell to individuals with little or no training, doctors and even some nurses began to confer less importance, and status, to the work of caregiving.

It comes as no surprise, then, that physicians now rarely, if ever, learn about what a family caregiver or health care aide must do unless they are faced with caring for their own loved ones. We doctors don’t know or aren’t always fully aware of what it takes to care for a patient after we leave the room......"

"........“Normally everyone is always focused on the patient, patient autonomy and the patient’s wishes in terms of the ethical standpoint,” said Dr. Virginia L. Hood, chairwoman of the Ethics, Professionalism and Human Rights Committee of the American College of Physicians and one of the paper’s authors. “But family caregivers are an important part of the health care team, too. We need to value these caregivers better, think about their needs and consider how they are central to the patient’s care, not just someone who happens to be pushing the wheelchair.”

Of particular importance is understanding how the work of caregiving can also give rise to a new set of medical issues: those of the caregiver....."

Grand Rounds is Up

Check out Grand Rounds, a collection of health care blog posts, at Musings of a Distractible Mind.

Ailing Couples One-Up each Other

From an article on MSNBC about the competition and shortened fuses that can happen when both partners in a couple fall ill with the flu. As I read it I couldn't help but think of all of us who don't get over our illness in a couple of weeks. We have to continuously craft new ways of relating to our partner, and to ourselves.

It's an interesting read -- Sniffle Wars: Ailing Couples One-Up each Other

"When a partner falls ill, empathy can have an expiration date. And in relationships that are taxed or struggling to begin with, it comes sooner rather than later."